We’ve still been enjoying our normal. Amazingly, no one has been sick. No other major incidents have happened. I keep reminding myself that something could change tomorrow but then enjoying each calm day as it comes.
The biopsy for Philip did show the esophagitis was unaffected by medication over the last six months so his doctor recommended a formula change. She wants him to be on hypoallergenic formula since it seems the esophagitis is being caused by an allergen. We switched on Friday so there probably won’t be an immediate change but hopefully in time that problem will clear up. He was also cleared from his nephrologist this week. He had developed some very tiny kidney stones several months ago due to the keto diet and partial dehydration. But since he has had his feeding tube and is regularly hydrated, all those issues have cleared up. She said he shouldn’t have to come back to her at all.
He has had very happy days this last week. In fact, we got some good pictures of smiles. Today, something got him tickled during the morning church service and I could hear him laughing from the choir loft. He sits in the back of the church with Ben. His friend, Mrs. Nancy, got him laughing tonight as well. It’s good to hear him laugh and see those smiles. Otherwise, he’s still a content little guy. His sleeping schedule is MUCH better now. I think we’ve finally gotten back to a workable routine for him. As far as we can tell, most of the last few nights, he has slept all night.
Joyanna’s changes are becoming more evident now. There is a loss of cognitive concepts that she did have a good grasp of. Her seizures are increasing as well. Just small one second ones, similar to the kind Philip used to have so many of. We are probably going to change or add a medicine soon. She is struggling again with behavior problems but you can tell now sometimes that she wants to have control but can’t. She is having a hard time getting words out. On the other hand, she has surprised us by doing some small things that would indicate developmental progress. I think just like it was with Philip these outward signs seem to go up and down depending on the week and some unknown factor in their bodies. It is hard to see these changes in Joy but I still haven’t been completely in despair about it. I can’t explain it. God’s peace has been so real.
Ethan turned two yesterday. We had a family celebration here at home. He is learning and growing so fast. Ben and I are amazed daily at the concepts he is “getting” and the words he is able to express them with. He can already do some things that Joyanna is struggling with so she has learned to ask Ethan to do them or she suggests that Ethan answer a question when she can’t get the words out. They play well together overall but they still have their times when Mommy has to intervene.
Philip’s room/the playroom is coming along very well. We just have a few finishing touches on Philip’s side of the room and we can upload some photos. We will finish the other side in the next month hopefully. Already the changes we have made are so practical and perfect for his daily needs.
My parents get to come out this week for a couple of days so the kids are excited to see Poppa, Granny, and Uncle Andrew. Please pray they have traveling safety on Wednesday and then Saturday going back.
We’re beginning to see glimpses of spring here. I know some of you have a bit more of winter but our daffodils, dutch irises and hyacinth are already up but haven’t bloomed yet. We’ve had a pretty mild winter but we are still excited for warmer weather. What we’re not looking forward to is the return of allergy season. Please pray that Philip doesn’t struggle as much with congestion and all its side effects during the spring.
Our hearts continue to be encouraged—by the Lord and His Word and by our family and church family; through songs, preaching, spoken words and cards. Thanks for your prayers. God hears and answers with His limitless grace.